Have you ever been there? Done that? Taken up the burden of a thousand tomorrows and suddenly realized you were doing it “again” – thinking so far in advance that you could barely make it through the day because of the crippling effect it had on your brain?
Remembering to take life one day at a time takes the inertia out of the downward spiral that seeks to plummet us into the depths of despair, a condition easy to fall into when you are physically challenged from being your parent’s full-time caregiver.
I know, because I’ve been doing it again – heaping all of Grandpa’s future care onto today. Lately, the load has been unbearable. Every time I see him lose strength, fear washes over me. I can’t lift or pull him up anymore without hurting myself, so I’ve stopped trying. The stress on my already compromised spinal cord is taking it’s toll – my weakness magnified by Grandpa’s frailness. I have to have one of the older kids help me at all times now. I wonder how I’ll make it in the future for I can only imagine what is coming – an even higher level of care then we give now.
Just yesterday, Grandpa couldn’t push himself up off the bed onto the walker. Then after lunch, he couldn’t push himself out of the wheelchair onto the walker to get into bed. I wasn’t about to pull him up, but I didn’t have to, because for the time being, Grandpa and I have figured out a way around his disability.
When we’re by ourselves, I wheel him into the bathroom and he pulls himself up on the bar by the toilet, then he turns around and grabs his walker. Then with my hand on his belt, he makes the laborious trip back to his bedroom to lay down and take a nap.
Sometimes he can’t move, though. I had to sing a rousing rendition of Stars and Stripes to get his feet moving – a nifty trick that caregivers use with Parkinson’s patients. Still, it took us about ten minutes to cover the 30 feet distance between the bathroom and his bed.
The following day, when I’m totally convinced that Grandpa is soon to be wheelchair bound, he shuffles off to the kitchen, full steam ahead like he’s in a race – and actually he is. It’s a race with a degenerative disease that no body can stop, except God. We arrive in the kitchen in record time – two minutes, instead of ten.
Once again, I’ve been fooled by Parkinson’s! One day your body works, the next it doesn’t, but who’s keeping track, right? Wrong. Parkinson’s has a nasty way of messing with my mind. I keep second guessing Grandpa’s symptoms and feel like I’m on an emotional roller coaster day in and day out. And the odd thing is, Grandpa seems to take it all in stride, even if his stride is only a tortoise’s pace. The slower he walks, the more I panic. Just how many tortoise and caregiver races are left before the tortoise has to sit them out, permanently? Only God knows, that’s for sure.
One Day at a Time
I finally know what’s been bothering me. It’s the weight of being totally responsible for Grandpa. I can’t drive him home at night to be locked behind the doors of a nursing home, to be someone else’s responsibility. He’s mine and my family’s now. Yes, I’m responsible for my children, too – that’s a given, but for the most part they’re healthy. They have medical issues now and then, but Grandpa is fragile – all the time – and that’s what I’m not used to.
I’ve pretty much had a sinking feeling inside for months, a certain dread that I haven’t been able to give voice to until now. Suddenly, I’m keenly aware of the “what if’s” of life. For the first time, I can truly sympathize with those who care for loved ones with disabilities and fear circumstances which beyond control might upset the delicate balance of care they so desperately need. Knowing how dependent Grandpa is upon us for his personal hygiene, medicine, and daily substance, the weight of being totally responsible for this little old man in any catastrophic situation scares me to death.
To illustrate my point, yesterday, Grandpa was having an “off” day. I got to his house about 1:00 p.m. and he was barely awake. He was actually “sleep eating” at the table, a semi-conscious state in which one eats a whole meal with their eyes closed. He informed me that he was having what Parkinson’s calls an “off day.” I tried to remain optimistic and encouraged him that the Bible says, “…For when I am weak, then I am strong..,” and that he could call it his “Jesus Day” instead.
I know it sounds ridiculous to say that to someone when they’re so out of it, but Grandpa just thrives on that kind of encouragement. Over the years, he has become quite an optimistic person, saying you can’t help but be that way with the Lord.
“What did you call it, again?” he asked.
“Your Jesus day, Dad,” I said. “Your Jesus day. When you are weak, He is strong.”
When I went to give him his lunch pills, I noticed the blue one was missing. That’s when he told me that he had only six pills for breakfast, instead of usual eight (he’s very sharp). Claire thought the medicine was at Walgreen’s waiting to be picked up, but I just hadn’t put it in the pill box yet. When I looked in his medicine tray, I could see that he had missed a Carbidopa, one of his Parkinson’s pills, and Aricept, one of his memory medicines (I don’t really know why he is on that – he doesn’t have Alseimers). Aricept is a very strong medicine and I would like to see him off of it or on the most minimal dosage in the future, but I don’t know if that is possible.
Just missing those two pills in the morning, severely affected Grandpa’s ability to function. Instead of having a productive day, sticking to his exercise routine and working on his book, he sat in front of the TV all day long and didn’t wake up until about 6:00 p.m. We experienced some of this behavior when we first brought him home and he was still on the Benzatropine. Seeing him dazed and struggling to come out of a fog brought me right back to my greatest fears about caring for him in a crisis situation. What can I do to make sure that we don’t run out of dad’s medicine in the future? They suggest keeping an emergency supply on hand, and I plan to, but this medicine is expensive. Still, I will have to try to squeeze that purchase in somewhere between rent, utilities, food and supplemental insurance payments.
Sorting through my feelings made me wonder how many older folks died during Hurricane Katrina? One article said nearly 200 senior citizens died in part from preexisting health problems such as Parkinson’s and heart attacks. Although hurricane conditions will never happen in the Midwest, any interruption in our ability to purchase diapers, wipes, and medicine, not to mention not being able to access water or electricity would be disastrous. We use a lot of water daily to wash grandpa’s sheets and clothes .
Hence my greatest fear – not being able to keep Grandpa clean and smelling sweet.
My only recourse is to cast my fear and anxiety on the Lord because the truth is that Grandpa is really His responsibility. Although we are living in uncertain times, our God shall supply all our needs according to His riches in glory. I truly believe that God is sovereign over the “what if’s” of life, 90-year-old Grandpas and 53-year-old daughters who need to be reminded that every day can be a “Jesus Day” especially when we lack the strength to make it on our own.
Who wants to go it alone anyway? Jesus is all we really need. “Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” 2 Corinthians 12:9-10
God’s grace is sufficient for every need – especially the “what if’s” of life.
Grandpa writing on his book about the nursing home
“I’m having a hard time beginning this entry,” I told Grandpa.
“Do you want help?” he said.
“Yes, if you can think of anything, I’d appreciate it,” I replied.
“But then it wouldn’t be you,” he said. “I’m thinking of something, but I don’t want to give it to you. I don’t want to be a ghost writer.”
A ghost writer, ha! That’s a good one. In a sense, Grandpa has been a ghost writer ever since he came home because all my subject matter originates with him. He’s a ghost writer, all right – once removed. There’s never a shortage of material, and although it may not be the most popular subject in the world – the trials and tribulations of taking care of an elderly parent – it is an opportunity to record a legacy for my children and stay somewhat sane through the process of journaling.
For instance, this post is about the terrible time we’ve had keeping Grandpa looking presentable. It’s much harder than you would imagine. He came home from the nursing home with a limited number of dress pants and khakis, and after a year of washing, they don’t launder well. I’ve added a few more khakis to his wardrobe, purchased from the Goodwill, but they were already worn to begin with, so lately, Grandpa has been looking a little disheveled, especially from the waist down.
To keep Grandpa smelling fresh, we wash his clothes daily, and the sad reality is, we don’t have the energy to iron them too. Besides all of the other duties we perform for Grandpa such as showering him, changing him three times a day, helping him get where he needs to go, and cooking three square meals, ironing doesn’t fall under the category of the urgent.
Anyway, let’s be realistic. We’re not living in the days of June Cleaver or Alice from the Brady Bunch (although having a live-in maid would defiantly solve the problem). No, we’re living in the days of permanent press and wrinkle-free cycles, so you really have to ignore standard operating procedures to achieve maximum wrinkle-free results by cramming clean clothes into laundry baskets and leaving them sitting around for a while so they can wrinkle again.
Because I don’t live at Grandpa’s, a lot of laundry goes undetected by my mommy radar. Most mothers possess a sixth sense regarding laundry that needs to be taken out of the dryer or promptly shook out and hung up from the basket. I’m not really sure what the issue is here. It could be because the washer and dryer are in the basement and the laundry isn’t being brought up on a daily basis, but the more I think about it, it’s probably the fact that the buzzer is broken on the dryer. Come to think of it, I haven’t heard it go off since we’ve been taking care of Grandpa. The truth be told, out of sight – out of mind. I’m out of sync with the wash!
If Grandpa’s pants were removed from the dryer immediately and hung on a hanger, we could possibly eliminate the need for ironing all together. But since we don’t know when the clothes are done drying, and the dryer is not likely to be fixed any time soon, we’ll just have to buy a few more pairs of $10.00 Wranglers from Wal-Mart.
As with most of the obstacles we’ve encountered, we accidentally stumbled onto a solution for this new challenge. Grandpa asked for a pair of blue jeans for his birthday, so Eric purchased what is supposedly his very first pair ever from Wal-Mart. When I saw Grandpa in his Wranglers, I said, “EUREKA! Why didn’t we think of that sooner?” I mean, you really have to do a lot to mess up a pair of blue jeans. For the most part, they will only get softer and better looking the more we wash them.
There are no words to describe how cute and wrinkle-free Grandpa looks in his Wranglers. A picture will have to do, only I’ll have to wait to take one because Grandpa’s Wranglers are in the wash. I have been informed by certain members of the family (who wish to remain anonymous), that it takes two days for the laundry to be brought up from the dark abyss. No wranglin’ about that!
This morning, when I stopped over at Grandpa’s house with some groceries, Claire had already given him a shower. She was almost done helping him dress, when I saw him pat her arm appreciatively. It touched me deeply to see him express his gratefulness in such an endearing way.
I thought of how he had drifted out of our lives and how painful it was to feel like we could never really connect with him. He was always so busy. The scene unfolding before me, the capable granddaughter caring for the needy grandfather was truly a grace-filled moment.
It is so important to touch daily – to connect – to reach out to give and receive love.
Grandpa let me know a few months ago how much he appreciates the way Claire gives him a shower. She has the special touch he needs–a touch he never received as a child. I remember, when he was younger (the time I was growing up in his house), how he never liked to shampoo his hair. He would drench it with Vitalis. A few months ago, I heard mention of him wanting a bottle again, but I don’t think he’s going to need it. He loves having his scalp messaged and shampooed by Claire. I’m going to have her train me in the art of grooming Grandpa.
Claire’s sacrifice was two-fold this morning, though – taking care of Grandpa and letting her brother sleep in. Eric has been getting Grandpa up almost singlehandedly since January. She commented that it made her feel like a good sister to let him sleep while she got Grandpa up and going. Her selflessness is beautiful to me.
My children are giving their all to help with Grandpa and I know these sacrificial acts of love will be rewarded by Jesus himself who came to serve and not be served. Yes, because He first loved us, we can find the strength to love and serve the needy among us – prodigal Grandpas who have returned to the security of family.
I am in awe of my older children and what they are doing for their Grandpa. I don’t say that because they are my children. That alone would not be enough to equip them for the task. They belong to the Lord and he gives them the strength they need daily to minister to their Grandpa in his old age. This is a season of touching and being touched, by God and each other…
When I kissed Grandpa goodbye on his head, his hair was soft, fragrant and clean – full of the vitality that comes from being loved and taken care of in your old age.
I heard the verse below being quoted on the radio as I pulled away from Grandpa’s house. My breath caught in my throat…“Then the King will say to those on his right, ‘Come, you who are blessed by my Father, inherit the Kingdom prepared for you from the creation of the world. For I was hungry, and you fed me. I was thirsty, and you gave me a drink. I was a stranger, and you invited me into your home. I was naked, and you gave me clothing. I was sick, and you cared for me. I was in prison, and you visited me.” Matthew 25:34
Grandpa complained first thing this morning about the view out the kitchen window. He wasn’t happy that the neighbor threw his garbage pails and recycle bin haphazardly between his fence and garage. I guess it’s my fault he’s been subjected to such an eyesore.
About a month ago, I moved the kitchen table over by the window so Grandpa could look outdoors instead of just staring at his food or the four walls of the kitchen. But unfortunately, the view out the window is limited to the neighbor’s garage.
Years ago, the backyard used to be a lovely place – a respite in the midst of identical suburban tract homes that my Uncle Meyer built in the 1950’s. It was a small yard, but like everything else in my mother’s life, she packed as much variety as she possibly could into that tight space. As a child I loved that yard. It was an ever-colorful landscape that changed with the seasons.
There used to be a tall maple tree in the middle and a huge weeping willow next to it. We had a swimming pool and playhouse fort in the corner. There were bushes growing down each side of the fence and in the back there was a vegetable garden, assorted fruit trees and a pussy willow bush, my mother’s favorite. Beyond the yard is the grade school I attended and it’s much the same as it was when I was a child. There’s a big, open playground area, surrounded by fields and houses.
Looking out the back window used to be a delight, but not anymore.
As mom and dad aged, they decided they needed a garage more than the view, so dad took a carpentry class at the local junior college, and with my brothers help, they built a one-and-half car garage that practically took up the whole back yard. Grandpa’s very proud of his garage, but it is the only thing you see if you look straight out the kitchen window.
If you sit parallel to the window, you sort of get a better view depending on how diligent the neighbor is about keeping his property tidy. Unfortunately, from the chair he was sitting in, Grandpa’s view is limited to the neighbor’s garage and whatever he wants to throw out on garbage day.
“It’s a real mess,” Grandpa grumbled to Eric.
The neighbor (who shall remain anonymous), was in his garage putzing about.
Grandpa didn’t want to be seen, especially since he had been complaining, so he asked Eric to move him away from the window.
“You’re a snoop,” Eric scolded.
But Grandpa couldn’t hear him.
“You’re a S-N-O-O-P!’ Eric spelled loudly.
Then I arrived and saw Grandpa eating breakfast at the kitchen table, so I joined him.
It wasn’t long before I heard about his complaint, too.
I stood up and looked out the window at the fence line and agreed, it was an unsightly mess. Then I looked out the window in the other direction. I chuckled because I saw what Grandpa couldn’t see. Our own garbage pails and recycle bin looked just like the neighbor’s.
“You’ve got a log in your own eye,” I teased Grandpa. “Our yard looks just as unsightly as the neighbor’s.”
Grandpa looked surprised, and then he smiled.
There’s nothing like eating humble pie for breakfast.
An eyesore, that’s what it is – the screen door flapping in the breeze is a real eyesore. To Grandpa, that is. This morning, I got a call from my brother (aka Uncle Jay) about that door, and sure enough, the squeaky Grandpa gets the door fixed.
Jay asked if all the parts were there. I thought they were, but I really wasn’t sure. I’ve been too preoccupied with other aspects of Grandpa’s care to even remember that the front door is broken until I slam it shut into place when I leave for the night.
That door has been broken since the springtime when the wind caught it and nearly pulled it off the frame. It’s still hanging on, but only by the outside hinges. I think it might have busted when Eric was heaving Grandpa up or down the front stairs or when we were carrying groceries in from the van.
You see, we don’t have a handicap ramp, but we do have Eric who is strong enough to lift Grandpa up and down the stairs in his wheelchair. However, he would have only been able to hold onto one thing at a time – either the screen door or Grandpa’s wheelchair. Can you imagine? There goes Grandpa. Wheeeeee! Bye, bye Grandpa. Don’t let the screen door hit you – or your wheelchair – in the rear!
Well, last night Grandpa called Uncle Jay to complain about the broken screen door. Claire was Grandpa-sitting, and I can just see the scene unfolding. They were probably watching some deep sea diving program on the Discovery channel, when suddenly, out of nowhere, Grandpa became disgruntled again about the broken door.
He has a phobia about that door. He’s worried that mosquitoes or flies will get in. He’s more worried about neighborhood gangs noticing a property “in disrepair.” He has told me on no uncertain terms that the broken door is an open invitation for gang activity – that we are just asking for trouble. He’s convinced that the neighborhood hoodlums will see it hanging askew and plot to break into the house in the middle of the night.
Yep, that unsightly door will encourage them to walk right in the house and take all his valuables. Next thing you know, we’ll see black-hooded thugs running around the block with a walker or drag racing up and down the street in a hospital bed.
I wouldn’t have let Grandpa talk to Uncle Jay about it, but poor Claire fell for the bait. Grandpa figured he’d complain again because it has done no good to complain to me. It’s true. He knows I’ll say what I’ve been saying for months, “Jay’s in charge of the door, dad. He knows all about it.”
So this morning Uncle Jay and I had a lively discussion over the whereabouts of screen door parts, broken dishwashers, and furnace filters that need changing every month. Things I’m sure I would have eventually thought about if I wasn’t so busy thinking about medicine, meals, and monthly budgets.
Screen doors, ha! The least of my concerns – but definitely first on Grandpa’s “most urgent” list.
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